My grandmother has dementia. It runs in the family. Her mother had it. Her mother’s father, allegedly, had it. (I’m choosing to take the positive here that my grandmother didn’t start getting bad at remembering things until she was 86.)
When I moved home after finishing my degree, I moved into a self-contained flat on the second floor of her house with my sister. (The sister recently moved out.) It was a win-win situation. Finding affordable living space in this area is near to impossible. Having someone she could trust in the house (although as her memory has slipped more and more, I’m sometimes the abstractly mean lady who lives on the second floor) was paramount, as the angst is a side effect of the dementia progressing.
Living with someone who has dementia, can be difficult. She’ll ask the same question several times in a conversation, and more times if she’s really concerned about something. We took her shopping around Easter, just when I’d got my new car. For some reason, she was really obsessed with getting baking powder (she loves making cakes), so baking powder was the refrain for the whole grocery trip. Never mind that we discovered several unopened packs of baking powder in her kitchen when we got back.
She’ll repeat several tasks over and over. The vacuum cleaner in particular is always getting a work-out. And she’s constantly cleaning up in her drawers – which will lead to inevitable confusion the next time she’s looking to find something.
Technology (save for the vacuum cleaner) has stopped working for her. The first thing was the microwave she got 20 years ago. A long time, it was mostly a storage unit. Then came the washer and television set (she had to have both of them replaced a while back, thus leading to total confusion now.) and for a long while there was constant complaining that her oven wasn’t working properly, as the cakes would be constantly burnt. (We’ve discovered it is less about the oven, and more about the setting she bakes at.).
I have discovered that how much or how little she remembers depends on chiefly two factors: Is she tired? Has she eaten enough in the day? If she isn’t tired, and have eaten regularly, the odds are higher that she’ll remember more.
We’ve had to label her kitchen cabinets, so she’ll know that she is allowed to eat the food therein. (She’s terrified of stealing other people’s food). And we’ve had to label her bathroom, as she kept coming up and asking if it was okay that she used the bathroom. (I have a separate one, for what it is worth.)
But, in between all the frustration, and the memory loss, there are good things too. When she isn’t feeling depressed for not remembering (and being 89) she has got quite a good mood. Her sense of humour is emerging and showing more than when she was in her 60s and 70s, when things were mostly about being proper.
She’s remembering and telling more and more about her childhood and formative years, including what it was like to live in Norway during the Second World War.
Her memory is very hit and miss, though. She’ll remember the oddest thing – that she can’t understand the Chinese guy who is renting in her basement, that I’ve got a new car, that her second cousin’s grandson ended up being a crook, that she’s going to “day care” some times during the week, that the home care workers who stop by are nice, that my mother once as a child commented on someone’s glasses…
The problem for us is that, with her form of dementia, she’ll often imagine things happening, and expand upon them. A trip to the day care centre becomes a huge outing to the winter resort where my grandfather came from, when in reality it is just across the populated valley below us. It makes it very difficult to trust what she’s telling us, which she fortunately knows most of the time.
She starts her introductions to strangers not with her name but with: “I can’t remember things, so don’t trust me.”
Despite all of the good and bad times, though – the really bad times for people with dementia are times like this.
Times when there is a big disaster going on, either natural or man-made, on the news or in the newspapers.
They can’t remember what has happened from time to time, each time they hear the news it is like they are hearing it for the first time.
Thus, Grandmother has already gone through several mourning phases for the children shot at Utøya and the deceased after the bomb in Oslo.
And when she gets the newspaper on Monday, the cycle will begin all over again.